Emily was born in a bathroom in Newark. She was tiny, premature, and had been prenatally exposed to a lot of drugs. After going through withdrawal in a hospital, Emily was placed with me as a foster child at one month of age. While I knew there could be long term effects from drug exposure, all I could see was this beautiful, tiny angel that was placed in my arms. I’m glad I didn’t know the full extent of challenges Emily would face, as I would have thought that raising her would be too much of a challenge for a single parent. Her significant needs unfolded gradually, and by then I had committed myself to being her mother. I adopted Emily, and with the love and support of many, have devoted myself to providing her with every opportunity to become her own best self.
Emily’s physical issues became apparent first, as for month after month her hands stayed tightly fisted and her arms were tight against her body or bent behind her. She began receiving physical therapy at 7 months, to try and combat the great stiffness in her body. Over time, Emily’s therapy regimen was expanded to include speech, occupational, aquatic, and hippotherapy. Her early diagnoses included Cerebral Palsy, Global Developmental Delays, and a Sensory Processing Disorder. Though she adored looking at them, Emily was unable to hold a toy until well into her second year of life. She could not sit independently until just after her 2nd birthday, crawl until age 2 ½, or pull to stand until age 3. Now, at age five Emily understands most of what is said to her, but expressively she is limited to a few sounds/words and two signs.
Emily had significant oral sensitivity and her oral motor skills were severely delayed. At 19 months, we learned that she was aspirating liquid so a feeding tube had to be surgically inserted. Emily had to be fed through the G-tube, using a pump, numerous times each day. Intensive feeding therapy helped Emily learn to chew and move her tongue from side to side, and this made it possible to remove the G-tube just before her 4th birthday.
In early 2008, intensive physical therapy helped Emily develop the ability to cruise and climb onto furniture and take productive steps in a walker. Unfortunately, she was hit with yet another medical challenge a few months later. Worrisome periods of shaking prompted specialized testing and several hospitalizations, which led to the additional diagnosis of a seizure disorder. The first few medications tried did not control Emily’s seizures, and this, along with the side effects of the medicines, caused her development to regress. Thankfully, the current medications seem to be working and Emily has rapidly regained ground and continues to move forward, developmentally.
While much of her story sounds rather bleak, life with Emily is anything but! She is a loving ray of sunshine who is as happy as the day is long, and she continues to press forward despite her formidable challenges. Socialization is her strongest area, and she happily snuggles, plays, and laughs with the many special people in her life. Emily loves books and plays with all kinds of toys. She ‘sings’ in her own way, loves to laugh, and especially enjoys ‘tackling’ me when we’re playing together. Emily crawls, pulls to stand, climbs, and is getting better and better at taking steps, sometimes without her walker! She is not yet fully on her feet, but with the help of continued therapy and the prayers of those who love her, she is going to get there!